Sunday, August 31, 2008

WG *loves* the tuba. When asked what she likes about it she says, "everything." Then she makes oompa sounds and dances around the room. She makes tubas out of whatever she can get her hands on: paper towel tubes, cardboard, plastic cups... Her love of the tuba has been long lasting. It's been about a year now and there is no sign of her wavering. Every day when we get her teeny 1/16th size violin out to practice she asks if they make teeny tiny tubas. And every day she sighs when I tell her that she has to wait until she's older.

The symphony's principal tubist was very excited when I told him about her love of the tuba. Last Valentine's day WG colored cut-out paper hearts to give to people. She made them for friends and family, but she saved the biggest, most colorful Valentine for the principal tubist's tuba. Not the person, but the tuba itself. He was pretty tickled by the whole thing. He offered to give her lessons. I asked if he taught 3 year olds. Well, no, but as soon as she hits jr. high...

So WG is stuck with the violin for now. We keep telling her as soon as she's big enough she can play the tuba. Honestly, she's a pretty big kid: tall and muscular so it wouldn't surprise me if she could physically handle it in a few years. She can already get a sound out of Tim's trumpet. We *know* she has lung power from the days (year) of terrible colic. Probably she needs some permanent teeth first, though....

Saturday, August 30, 2008

In the interest of remembering these things when WG is older, I thought I'd write some current stats down...

Favorite color: yellow (pronounced "yayyow")

Favorite number: 6

Favorite vegetable: baby corn

Favorite fruit: grapes, strawberries and blueberries

Favorite meal outside the home: Garlic chicken from the Thai restaurant. They love her there because gets her own entree and clearly enjoys eating it. I guess they don't get too many 4-year-olds who beg to go to their restaurant.

Favorite meal at home: plain cold GF spaghetti noodles. Also, any kind of bean, olives, cheese, rice, corn tortillas.... WG will pretty much eat anything. The only thing that she is picky about (right now) is that she likes her food COLD.

Favorite item of clothing: the dress. WG will not wear anything but dresses. The dress that she chooses most often to wear is the rocket dress, but she loves all of her dresses and has a hissy fit when I try to weed out the ones that are too short.

Favorite thing to do: make bracelets from pipe cleaners and pony beads.

Favorite characters: Curious George and Veggie Tales

Favorite possession: Her red super hero cape. She wears it every day.

Current obsession: finding the holes in the ceiling wherever we go.

Current career aspiration: To be a Veggie Tale, specifically, Larry Boy. A few weeks back if you asked her what she wanted to be when she grew up she would cheerfully reply, "I'm going to be a vegetable!" We have coached her out of that one and now she says that she wants to be "Wawwy boy, supuhhewo!"

Misc quirk: WG despises white crayons. When she finds one she takes it right to the trash and throws it away. A good friend recently introduced her to colored paper so we'll see if her attitude toward the white crayon changes....

Imaginary friends: Oma, Bad Alice, and Jamie.

Collection of the moment: wine corks. She just likes them. She looks at them, sorts them, builds towers with them, and plays out little dramas with them like they are people. Also, WG has her own collection of fat quarters. For those of you who do not sew or quilt, a fat quarter is a cut of fabric that is 18 inches long by 22 inches wide. She loves fabric and I'm sure would love to be let loose on my sewing machine. When I sew she takes my scraps and pins together her own creations announcing "This is the bodice and these two will make up the skirt. I think I will put ric rac here and I will use the red to embroidery it." I will admit that her collection of fat quarters are a big pile of bribery. But, for me the price of a fat quarter is a small price to pay for a happy peaceful trip to the fabric store.

Wednesday, August 27, 2008

WG is sitting on the floor drawing pictures. She has drawn a sun and a family of three walking on grass. She's giving me a running commentary while she's drawing.

WG: "Here is a sun and here is a person. He doesn't have hands. She doesn't have hands neither and this is the dad. He doesn't have hands and he doesn't have any eyeballs...... Now he has eyeballs..... They don't have any bones, they are sacks of jelly.... Here is a big flower in their garden.... They don't have any hair. Maybe if I give them hair a dog will eat them. (!?) Here is the orange dog."

Me: "did the dog eat them?"

WG: "No, not yet. Pretty soon, though."

If Tim can scan her picture in I'll post it. It's basically as described. One of the people has fushia colored, Rapunzel-length hair. The orange dog appears to be licking it. Poor armless, boneless person doesn't know what's in store. She can't run either, because, well, she is a sack of jelly.

Friday, August 22, 2008

It is approaching our one-year mark of going gluten free. This is not an easy diet. BUT, like anything, with time you figure out little tricks and then one day you realize that it has become second nature.

I was lucky enough to have a neighbor who's family has multiple food allergies to deal with. Her husband can't eat gluten, her daughters can't have dairy, chocolate, almonds, etc. She deals with these limits effortlessly and was kind enough to take me under her wing when we started the diet. She told me which GF foods were good, which were nasty, which "regular" foods were okay, etc. And, most importantly, she has been a constant support that we ARE doing the right thing, even with the ambiguous diagnosis of "non-celiac gluten grain intolerance." During a year when the GI docs would say, "well, she does not have the celiac gene, which means that she only has a 3% chance of having celiac disease..." Marsha would tell me that she was seeing what we were seeing: WG was out of control on gluten and a happy kid off of it. For me, support was KEY to getting through the rough beginnings of the diet.

When we first started the GF diet, we experienced major grocery bloat. Part of this is rising food cost, no doubt, but GF food is NOT cheap, either. In the past year I've figured things out and our food budget is just about where it was before, adjusted for inflation.

Here are some tips for going GF and not blowing your whole paycheck at the health food store:

(Disclaimer: YOU need to read all food labels and decide if things are okay for YOU to eat. Just because I mention something here doesn't make it safe for YOU to put in your mouth. Oh, that I had that kind of power.....)

* Find the things that are "naturally" gluten free. Fruit does not have gluten, nor do veggies and we all need to eat more of those. Nuts, popcorn, chips: all these are available at the regular grocery store and are generally GF (check the seasonings, though!)

* Redefine your definition of breakfast. Breakfast is tough here. Don't even bother going down the cereal isle in the regular grocery store. Cocoa Pebbles is currently GF and that's about IT. All the rest have malt, which has gluten. Some people can tollerate regular oats and some can't. WG's current breakfast rut consists of a few pieces of ham, a piece of cheese, and a piece of fruit. She eats it and I figure it's more nutritious than the GF cereal that is full of sugar and not much else. I eat leftovers from dinner. We also do homemade granola quite a bit because it makes a huge batch and we all like it.

* Find bread alternatives. GF bread can be made / found in various degrees of edibility (is that a word?). It's expensive and not always worth it. Rice cakes and corn tortillas are generally GF, and can be bought in a "normal" grocery store cheaply. With WG getting enough calories was a problem around the time when we started the diet. Her absolute favorite lunch from that time was microwave nachos: corn chips on a plate with canned refried beans, whatever veggies I could throw on and cheese. Nice lunch, "normal" food, no bread!

* Take advantage of the low-carb craze. There are TONS of cookbooks out there dedicated to the low-carb diet. Lucky for us many of the recipes fit very nicely with the gluten-free diet. These are GREAT to page through if you are having a hard time figuring out what the heck you can eat now. Actually, I almost prefer them to the gluten free cookbooks because they don't call for ingredients like xanthan gum.

* Passover is my favorite non-Christian holiday. Actually, I really like right after Passover when all the "kosher for Passover" food goes on sale. Bullion, soup mixes, etc that are marked this way are generally GF (watch out for matzo, though.).

* Shop in bulk. Amazon.com has a huge grocery section with, in turn, has a very respectable GF section. The only problem is that you have to buy in bulk which is a little risky if you haven't tried the products before. The savings are HUGE, though. I recently priced our family's favorite GF pretzels. In the store here they cost about $8 a bag. On Amazon they are $5.21 a bag. If you sign up for the automated repeat shipping on Amazon (you can always cancel) it's even less: $4.43 with free shipping. Of course you have to buy 12 bags at a time, but if you have storage space and know you like the product this could be a great way to save money. There are similar savings on GF bread mixes, etc. My neighbor and I have talked about splitting a shipment which would make storage more reasonable.

* Check out online options for flour. Gluten free mall has a ton, including pre-mixed "all-purpose" types. That's another thing: sometimes it's a wash cost-wise between buying all the flours to mix your own and the pre-mixed flours.

* If you have been diagnosed as needing to eat this way, you can deduct some of the cost of the GF food from your taxes. (Disclaimer: I am a violist, I am NOT an accountant!) The jist is that you can deduct the difference of what the GF food is from what the "normal" food costs. So, if a bag of GF pretzels costs $8 and a bag of regular pretzels costs $3, then you can deduct $5.

* Adjust your attitude. I say this gently and with a lot of love. Think about it: gluten free foods, *especially* baked goods / flours are more expensive than their wheaty counterparts. BUT, think of all the doctor co-pays, medications, missed days from work, etc that you are saving by eating this way! Not to mention the horrible stomach pain, diarrhea and constipation! The last time you were hunched over wishing for a swift death I bet you GLADLY would have paid the price of a bottle of xanthan gum to be done with the misery.

It's tough. My advice is to allow yourself some budgetary wiggle room for a few months to figure out what GF things you like, what you don't, and what the heck you can actually eat! Sometimes (especially in the beginning) you need to make the $6 brownie mix for the sake of your mental health. A world without any baked good of any kind is a bleak one. Cut yourself some slack to adjust to your new normal. Grocery bloat doesn't last forever.

Her four-year-old well check was Tuesday. She's around 39 pounds and about 43 inches tall (3 foot 7) which is tall and slim. So, par for the course. WG has been an amazon since birth. Her pediatrician looked at her feet and said, "Those feet are big enough for a six year old!" That's my girl!

We talked a lot about her sensory issues. Sensory Integration Disorder seems to be the trendy dx of the times. Like ADD/ADHD, it's a tough call. Certainly the disorder exists, but when does quirky cross over to disfunction? Preemies especially seem to have sensory issues. This has been a battle in one way or another with WG since birth. She has always been funny about her feet, which makes sense since preemies are subjected to several heel pricks every day. When the child refuses to put their feet on the ground (in WG's case as a baby) it clearly crosses over to the problem area. You can't learn to walk if you won't put your feet down. The issues right now are related to her perception of (or more accurately, lack thereof) pain. Well, that's my biggest concern, at least. I'm scared silly that sometime she will have some sort of infection and we will have no idea until things get serious because she doesn't experience pain the way most of the population does. WG's also a very physical child: spinning, leaping, hanging upside-down, in-your-face. The dare-devil stunts coupled with the lack of natural consequences pain-wise is a frightening combination. Does this cross the line from normal quirky four-year-old behavior? I don't know. It causes stress in our home, which is why we talked to the pedi about it.

We also talked about speech, learning, eating. The pedi, at least, seems glad that she's still GF. Her own daughter has celiac so she has done a lot of research into it lately and realizes that going GF can greatly benefit many many people, not just dx'ed celiacs.

WG had another follow-up with the GI doc today. Mostly routine. She is still constipated so we're upping the Miralax to twice a day and staying the course with the Prevacid. (BTW, the discount card worked but it took 4 Pharm. Techs at Walgreens a good 20 minutes to figure out how to do it. Hopefully now they know and it won't be a production every time she needs a refill!)

Wednesday, August 20, 2008

It was time for bed. The stories were read, teeth brushed, medicine taken. Cue the stalling.... WG: "But, Mom, I will miss you!"Me: "I'm not working tonight, WG, I will just be in the living room."WG: "But, you are going to leave me in the prison that is my room!"Me: completely speechless.

Last week her violin teacher gave her a belated birthday present of a flipflop keychain with the words "Drama Queen" written on it. Boy does she have WG pegged!

Monday, August 18, 2008

My grandmother died Friday night. She was 90 years old. This is a hard thing to write about because, well, death just is. I love my grandmother very much and will miss her. I'm sad that WG probably won't remember her. She will know her through stories and pictures.

I've been thinking about what I will tell WG about Grandma. The beach... the zoo, and her relationship with Max and Jenny who were two ourangutans who lived at the zoo... Taffy the very large next-door-neighbor dog... the fun times playing in the attic with Aunt Bonnie's old formal dresses, crutches and Grandma's shoes... playing with Dad's old skee ball... the push lawnmower... the horse hitch in the front and the milk door in the back... Little tree Lindon who absolutely REFUSED to die despite everyone's best efforts... bridge mix (mmmm)... Playing Uno, Yatzee and occasionally rummy... Hamburgers on Friday (Sat?) night with buttered grilled buns... Fried perch... jello salad (99% of the time she made a great jello salad with jello, marshmallows, nuts, and who knows what else. It was creamy and while it was solid I don't remember it being particularly gelatinous. One time, though, she told us that she had made jello salad and it turned out to be lemon jello with spinach, celery, nuts and something else that was equally horrifying. It sticks out in my memory because she was a very good cook and it was one of very few misses.)... O&H bakery... bedlunch... the wooden puzzle that looked like a shoe... her knitting and many many donations for charity... watching wheel of fortune... writting letters back and forth... seven kinds of homemade cookies every time we visited.....

Grandma was a knitting fiend. She always had something going until a little bit before WG was born when she couldn't knit anymore due to arthritis. She knit sweaters, caps, layettes, blankets... She donated TONS of items to a gift shop to be sold to raise funds. (I can't for the life of me remember what the affiliation was, I think it was a Lutheran nursing home?) We are lucky enough to have a pink sweater she knit. It's a little small on WG now. We've packed it away for whichever grandchild winds up having the next girl. We also have a baby hat she knit. She gave me the hat when I was pregnant with WG saying that it was to be her going home hat. I smiled and thanked her but was privately freaking out because the hat was HUGE. The hat still fits WG's four-year-old head to give you an idea of the size. As a first-time-mom I had no idea what to expect and the thought of something that large coming out of my body made me want to run to my OB and ask for a C-section.

Thursday, August 14, 2008

WG is taking Prevacid for reflux and whatever else is going on in her tummy. We have pretty good prescription drug coverage, but it's still a $30 copay every month. Add to this that she is taking two other GI meds and it gets expensive quickly.

A friend tipped me off that Prevacid offers a "frequent buyers" program of sorts. If you sign up on their site, they will send you information about prevacid (of course) as well as an instant rebate card that takes $25 off each refill. No forms to fill out each month, you just give the card to the pharmacist and get the discount. We got WG's card today just in time because she needs a refill.

Here is the URL to sign up for the program: https://www.prevacid.com/offers/landing.aspx I put in WG's information (name, age, etc) which was strange because she's only four, but it seems to have worked. I have no idea if Prevacid will spam me or send us things in the mail, etc, but honestly, for $25 a month in my pocket I don't really care!

Monday, August 11, 2008

Four years old. It's crazy because I feel like WG was a baby last week. I blinked and now she is a little girl....

We had a nice day today. WG's birthday is bittersweet for me. Of course it's a joyous thing to be celebrated, but it's also the anniversary of the beginning of a very scary time for Tim and I. It's a difficult thing to explain to people who have not been affected by prematurity. Watching your child struggle to live when life has hardly begun is something no parent should have to do. It is life-altering. Every year the memory gets easier but I think it will always be something we think about on her birthday. WG and I had a relaxed day. We snuggled in the morning and around 10:30 am, which, incidentally, is about the time she was born, she asked me to "tell (her) the story about when she busted out of (my) tummy." She was particularly interested in the part where Tim and I ran around like crazy people at 4 am trying to pack bags since my water broke a month early and we didn't have the hospital bags packed. She wanted to know what we took with us. I told her that I only remembered what we forgot to pack: underwear, toothbrushes, basic essential items.... We looked at her hospital anklet which shocked both of us with it's smallness. I held it to her ankle now and it didn't even go half way. We also looked through her NICU baby book which has pics and stats from that time and is one of her favorite things to look at. We had cake and presents when Tim came home from work. I pushed the "easy" button this year and bought a gluten-free cake, chicken nuggets and tator tots from the organic grocery store. WG wanted to eat her cake first so we had backward dinner tonight: dessert first, then dinner. She was so excited about blowing out the candles that we lit them for her twice.

She (of course) loved all her presents. Aunt Beth, she opened the card you sent, took out the fabric and started waving it around yelling, "A fat quarter! I got a fat quarter for my birthday!!!!" I'm still on the hunt for a needle guard to get her started sewing on the machine.... I'll have to take some pics of her creations. She does a whole lot with my scraps and a bunch of straight pins!

Sunday, August 3, 2008

The kitchen overhaul has officially started. It's hard to find words that express my glee... Today we found a range hood / microwave on clearance at Home Depot so we scooped that up along with flooring. I had a wedding and reception today so Tim started ripping out the old floor while I was away. At first he shooed WG away but she was very insistent about helping so he put safety glasses on her and had her pick up bits of tile and then scrape paper off the floor. He said she loved it and was actually a very big help.